Social innovations are usually understood as new ideas, initiatives, or solutions that make it possible to meet the challenges of societies in fields such as social security, education, employment, culture, health, environment, housing, and economic development. On the one hand, many citizen science activities serve to achieve scientific as well as social and educational goals. Thus, these actions are opening an arena for introducing social innovations. On the other hand, some social innovations are further developed, adapted, or altered after the (...) involvement of scientist-supervised citizens in research and with the use of the citizen science tools and methods such as action research, crowdsourcing, and community-based participatory research. Such approaches are increasingly recognized as crucial for gathering data, addressing community needs, and creating engagement and cooperation between citizens and professional scientists. However, there are also various barriers to both citizen science and social innovation. For example, management, quality and protection of data, funding difficulties, non-recognition of citizens’ contributions, and limited inclusion of innovative research approaches in public policies. In this volume, we open theoretical as well as empirically-based discussion, including examples, practices, and case studies of at least three types of relations between citizen science and social innovation: domination of the citizen science features over social innovation aspects; domination of the social innovation features over the citizen science aspects; and the ways to achieve balance and integration between the social innovation and citizen science features. Each of these relationships highlights factors that influence the development of the main scales of sustainability of innovations in the practice. These innovations are contributing to a new paradigm of learning and sharing knowledge as well as interactions and socio-psychological development of participants. Also, there are factors that influence the development of platforms, ecosystems, and sustainability of innovations such as broad use of the information and communications technologies including robotics and automation; emerging healthcare and health promotion models; advancements in the development and governance of smart, green, inclusive and age-friendly cities and communities; new online learning centers; agri-food, cohousing or mobility platforms; and engagement of citizens into co-creation or co-production of services delivered by public, private, non-governmental organizations as well as non-formal entities. (shrink)

Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.

I compare two different arguments for the importance of bringing new voices into science: arguments for increasing the representation of women, and arguments for the inclusion of the public, or for “citizen science”. I suggest that in each case, diversifying science can improve the quality of scientific results in three distinct ways: epistemically, ethically, and politically. In the first two respects, the mechanisms are essentially the same. In the third respect, the mechanisms are importantly different. Though this might appear to (...) suggest a broad similarity between the cases, I show that the analysis reveals an important respect in which efforts to include the public are more complex. With citizen science programs, unlike with efforts to bring more women into science, the three types of improvement are often in conflict with one another: improvements along one dimension may come at a cost on another dimension, suggesting difficult trade-offs may need to be made. (shrink)

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

The articles in this issue direct our attention to the role of concepts in medical ethics. The issue includes research that defines a concept,1 research that applies concepts to illuminate the moral aspects of various elements of medicine,2 3 and research investigating the appropriate set of concepts to teach medical students.4 In their in-depth exploration of the concept of disease in this issue, Powell and Scarffe argue that our understanding of a concept should be ‘tailored to the role that the (...) concept plays in the institutional settings in which it is deployed’.1 Their methodology takes seriously the institutional context in which a concept operates. This approach to thinking about concepts is potentially applicable very broadly in medical ethics. What is the institutional role that a concept plays? What is the work that we need the concept to do? The feature article by Powell and Scarffe proposes a new definition of a foundational concept in medicine, that of disease. On their view, ‘a biomedical state is a disease only if it implicates a biological dysfunction that is, or would be, properly disvalued’.1 They describe their definition as involving both a moral criterion and a biological criterion. A number of commentators engage with Powell and Scarffe’s proposal. Tekin focuses on the moral criterion, through the example of grief and depression. …. (shrink)

Technology corporations and the emerging digital health market are exerting increasing influence over the public healthcare agendas forming around the application of mobile medical devices. By promising quick and cost-effective technological solutions to complex healthcare problems, they are attracting the interest of funders, researchers, and policymakers. They are also shaping the public facing discourse, advancing an overwhelmingly positive narrative predicting the benefits of wearable medical devices to include personalised medicine, improved efficiency and quality of care, the empowering of under-resourced communities, (...) and delivery of health services previously unavailable to the citizens of developing countries. Typically techno-optimist in their description, the key barriers to this impending inflection point in healthcare are identified as technical issues such as short battery life and a lack of data protection. However, this tech innovation narrative is consistent with problematic ethical, social, and political assumptions that have practical and normative effects, and risk, one, undermining the real clinical potential of wearable devices and, two, designing social inequality and injustice into our mobile health interventions in global healthcare. I argue that the foundational assumptions dealing with the just distribution of healthcare ‘goods’, the individual as part of society, and the political framing of future healthcare policy devalue equity and despite what they promise cannot meet the distinctive needs of individuals and groups that do not conform to a standardised concept of care-receiver. (shrink)